| Publikationstyp: | Beitrag in wissenschaftlicher Zeitschrift |
| Art der Begutachtung: | Peer review (Publikation) |
| Titel: | Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study |
| Autor/-in: | Mählmann, Laura Schee gen. Halfmann, Sebastian von Wyl, Agnes Brand, Angela |
| DOI: | 10.1159/000486588 |
| Erschienen in: | Public Health Genomics |
| Band(Heft): | 20 |
| Seite(n): | 293 |
| Seiten bis: | 306 |
| Erscheinungsdatum: | 2018 |
| Verlag / Hrsg. Institution: | Karger |
| ISSN: | 1662-4246 1662-8063 |
| Sprache: | Englisch |
| Schlagwörter: | Altruism; Citizen science; Data protection; Data sharing; Direct-to-consumer personal genomics; Older adult; Personalized medicine; Privacy; Research participation |
| Fachgebiet (DDC): | 150: Psychologie 302: Soziale Interaktion |
| Zusammenfassung: | Objective: To assess the willingness of older Swiss adults to share genetic data for research purposes and to investigate factors that might impact their willingness to share data. Methods: Semi-structured interviews were conducted among 40 participants (19 male and 21 female) aged between 67 and 92 years, between December 2013 and April 2014 attending the “Senioren Universität” Zürich, Switzerland. All interviews were audio-recorded, transcribed verbatim, and anonymized. For the analysis of the interviews, an initial coding scheme was developed, refined over time, and applied afterwards to all interviews. Results: The majority of participants were in favor of placing genetic data to research’s disposal. Participant’s motivations to share data were mainly driven by altruistic reasons and by contributing to the greater good. Furthermore, several factors which might impact the willingness to share data such as sharing data with private companies, generational differences, differences between sharing genetic data or health data, and sharing due to financial incentives were highlighted. Last, some participants indicated concerns regarding data sharing such as misuse of data, the fear of becoming a transparent citizen, and data safety. However, 20% of the participants express confidence in data protection. Even participants who were skeptical in the beginning of the interviews admitted the benefits of data sharing. Discussion: Overall, this study suggests older citizens are willing to share their data for research purposes. However, most of them will only contribute if their data is appropriately protected and if they trust the research institution to use the shared data responsibly. More transparency and detailed information regarding the data usage are urgently needed. There is a great need to increase the engagement of older adults in research since they present a large segment of our society – one which is often underexamined in research. Conclusion: Increased focus on general public engagement, especially of older adults, in scientific research activities known as “citizen science” is needed to further strengthen the uptake of personalized medicine. |
| URI: | https://digitalcollection.zhaw.ch/handle/11475/3310 |
| Volltext Version: | Publizierte Version |
| Lizenz (gemäss Verlagsvertrag): | Lizenz gemäss Verlagsvertrag |
| Departement: | Angewandte Psychologie |
| Enthalten in den Sammlungen: | Publikationen Angewandte Psychologie |
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Mählmann, L., Schee gen. Halfmann, S., von Wyl, A., & Brand, A. (2018). Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study. Public Health Genomics, 20, 293–306. https://doi.org/10.1159/000486588
Mählmann, L. et al. (2018) ‘Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study’, Public Health Genomics, 20, pp. 293–306. Available at: https://doi.org/10.1159/000486588.
L. Mählmann, S. Schee gen. Halfmann, A. von Wyl, and A. Brand, “Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study,” Public Health Genomics, vol. 20, pp. 293–306, 2018, doi: 10.1159/000486588.
MÄHLMANN, Laura , Sebastian SCHEE GEN. HALFMANN, Agnes VON WYL und Angela BRAND, 2018. Attitudes towards personal genomics and sharing of genetic data among older Swiss adults : a qualitative study. Public Health Genomics. 2018. Bd. 20, S. 293–306. DOI 10.1159/000486588
Mählmann, Laura , Sebastian Schee gen. Halfmann, Agnes von Wyl, and Angela Brand. 2018. “Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults : A Qualitative Study.” Public Health Genomics 20: 293–306. https://doi.org/10.1159/000486588.
Mählmann, Laura , et al. “Attitudes towards Personal Genomics and Sharing of Genetic Data among Older Swiss Adults : A Qualitative Study.” Public Health Genomics, vol. 20, 2018, pp. 293–306, https://doi.org/10.1159/000486588.
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